Genesis at the United Nations

Lessons from the Zero Project Conference on including the lived experience of children and young people in strategy development

By Sophie D’Souza

27^th April 2026

In February, I was lucky enough to attend the Zero Project Conference 2026, a unique global meeting place to innovate for disability inclusion. The conference took place at the United Nations Office in Vienna. It marked an important moment: 20 years since the Convention on the Rights of Persons with Disabilities (CRPD) was adopted and 8 since it was ratified in Ireland.

For context, the Zero Project is a global, research-driven initiative established by the Austrian non-profit, the Essl Foundation in 2008. Its aim is to advance implementation of the CRPD by identifying and sharing innovative solutions that remove barriers for persons with disabilities. This year, 1,400 participants from around 100 countries came together to discuss the theme of “Accessibility, ICT, and Crisis Response”.

What stood out to me was a statement from Sinéad Burke, educator, author, and founder of Tilting the Lens. In her opening address, she reminded us that “lived experience is intellectual property.”

It is not enough, she said, to acknowledge lived experience or include it symbolically. Treating lived experience as intellectual property means more than financial recognition. It requires equalising lived experience with academic and professional expertise, and ensuring it is meaningfully embedded in decision-making, rather than treated as token input.

Treating lived experience as intellectual property presents an important challenge for organisations like Genesis, because it requires rethinking how knowledge, authority, and value are defined within research and strategy development.

Unlike traditional forms of expertise, lived experience is not formally credentialled or owned by institutions, which raises questions about how it is recognised, represented, and safeguarded without being extracted or tokenised.

This is a challenge we are already working on through participatory research approaches that move beyond consultation towards shared ownership of the research process. By involving people with lived experience as co-researchers and embedding them in design, analysis, and interpretation, we aim to ensure that lived experience is not only included but meaningfully shapes outcomes as a recognised and influential form of expertise.

 In practice, this approach is helping to reshape how we design inclusive research and strategy processes, redistributing influence across every stage of decision-making rather than treating participation as a single point of consultation.

What this looks like in practice:

A practical example of meaningful inclusion of lived experience from the Zero Project Conference can be seen in the We Can Work programme from Light for the World, an international disability and development NGO working across countries including Ethiopia, Kenya, and Uganda.

They have developed the Disability Inclusion Facilitator approach (DIFA), a peer-led model that turns lived experience into professional expertise. It does this by training young people with disabilities to work inside organisations as facilitators, supporting them to move from intention to action on inclusion.

This model is important because it demonstrates how lived experience, when embedded as expertise, can create impact across individuals and organisations. The benefits of this for organisations as well as for the DIFs themselves are of course many and include better representation, access to meaningful, paid work and increased confidence.

The societal impact is still more impressive and clearly demonstrated by Robert Ssewagudde’s and his success. Empowered by taking part as a Disability Inclusion Facilitator, he went on to run for and be elected to a political position in his local council in Uganda.

Another practical example of meaningful inclusion comes from Child Support Tanzania, who have supported children and young people to lead accessibility audits. These initiatives have helped transform schools and communities into more disability-friendly environments for children.

This is another clear example of meaningful inclusion of lived experience in action, where children and young people are not just participants in research or programmes, but active contributors to change.

What this means for Genesis and our clients:

It is our hope and an ongoing aim in our work at Genesis that we continue to think creatively and practically about how people including children and young people are listened to and consulted as part of strategy development. We also aim to ensure that optimism for change is matched with practical methods that make meaningful participation possible in real-world settings.

I am grateful to Genesis for enabling me to attend the Zero Project Conference 2026 as part of my ongoing learning and development. I am also grateful to our client, the CRC, for our collaboration, which has allowed us to develop participatory, service user-led focus groups with service users of all ages.

The Zero Project Conference reinforced a simple but demanding idea: lived experience is not supplementary to strategy, it is foundational to it. The challenge for our clients is not whether to include it, but how to embed it meaningfully at every stage of decision-making. This work is ultimately about shifting how decisions are made, so that lived experience is embedded from the outset.